Celiac disease is often mis- or underdiagnosed.  Many people who approach their physician explain their symptoms and are diagnosed with Irritable Bowel Syndrome, fatigue or stress — or something else all together.

The problem in delaying the diagnosis of celiac disease is that it can lead to so many other issues like osteoporosis, cancer, infertility and other serious health issues*.

Researchers just published a new study (I found on 7thspace.com) looking at the delay in celiac disease diagnoses.  They sent out 1500 questionnaires to people in Sweden with confirmed celiac disease and received about 1,000 back.  Of those 1,000 here’s what researchers learned:

  • Average delay in diagnosis after first symptom was 9.7 years
  • Average delay in diagnosis after first doctor visit was 5.8 years

Scientists said these numbers did reduce over time in some cases.  My guess is greater awareness has led to some quicker than average diagnoses.  But the one thing that made me say “Yikes!”….Does this mean the average celiac patient sits on their symptoms for four years?

Researchers reported there was definite improvement in quality of life from before, to after diagnosis (and treatment).  Diagnosed celiacs who went on the gluten free diet (treatment for celiac) apparently felt better than the “healthy control subjects”.

In conclusion, the scientists said the delay from first symptoms to diagnosis was “unacceptably high”.  The study said, “By shortening the diagnostic delay it is possible to reduce this unnecessary burden of disease. Increased awareness of CD [celiac disease] as a common health problem is needed, and active case finding should be intensified.  Mass screening for CD might be an option in the future.”
*Source: National Institutes for Health

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One Response to “New Research: Delays in Celiac Diagnosis”

  1. I understand this completely. I was originally told by my doctor and specialist it was just really bad IBS. Seven years later not the case. It is hard though to diagnose. Hopefully the testing process will Improve in the coming years.

    What’s great to see is the awareness being raised and the amount of great products hitting the shelves. With the word spreading it might be easier for people and the medical profession to understand celiac disease as research continues.

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